And here we are, in the PICU at the new Hopkins children's center.
Right now Callum is sleeping through a Star Wars marathon that we only keep running because we're afraid the sudden silence might wake him. And despite a lot of pain medication, he's been stubbornly wakeful all day, since emerging from surgery at around 12:30.
The doctors report the procedure went pretty much exactly as planned, and Cal has been a total trooper throughout.
The anesthesiologists were kind enough to let both me and Janet stand at Cal's bedside when they put him under. What a great team - they were chatting with Cal all the way into the operating room and he was chatting right back.
Cal: "do you have a computer in the operating room?"
Doctor: "We have three."
Cal: "I think I'm going to like this surgery!"
Committing to this surgery - emotionally - has been one of the hardest decisions yet in our SMA journey, but we've never doubted its necessity, and we've never doubted that in Dr. Sponseller's team we were going to the best people to do this job. And I don't think we've ever doubted that Callum was up to this ... just worried at the thought of putting him through anything more painful or dangerous than what he's already up against. But at the end of day one, I think we're all feeling mostly relief and resolve ... and optimism.
Tomorrow morning, if all goes as planned, his breathing tube will come out and he'll really start on the journey of recovery by taking over the work of breathing for himself, and hopefully eating some real food. We've managed pretty effective communication today with just eye wiggles and blinks, but a day without Callum's voice is a long day indeed. Tomorrow we hope to have it back.
Our deepest gratitude to all who are keeping him in their thoughts.